This is a very special blog post. WELL worth your time to read. This is a story of survival. And love. And bravery. A REALLY beautiful story. About a LOVELY Colorado family and the light that surrounds them.
The past 20 months have gone by quickly. We thought we would be in a different place with our life, with our family of four. Today we have a five year old girl named Lily and a 20 month old son named Everett. The name Everett means hardy and brave. That he is. Everett joined our family through a complicated course of events that could have ended in a few different ways. He is here with us today because of medical intervention. He is here because I trusted my gut and listened to that little voice. He is here today because he fought to survive. He is a fighter. He is a warrior. He has had so many pokes and scars remain on his hands, feet and legs. Everett’s birth was a medical decision to save my life and his. His entry into life was not how we planned. He was born at 27 week gestation (a normal pregnancy, of course is 40). He had a placenta and cord complication that caused severe growth restriction for him. I had multiple complications that could lead to stroke and death. We weren’t ready for him. We mourned it all and I still do from time to time, it’s getting better with time. I can enter that place at any moment on rough days. I feel sad I didn’t feel him grow in my belly. I barely looked pregnant. I lay in a hospital bed with women giving birth next to me to full term healthy babies while I spent weeks in the hospital. I could hear them. I ached. My body could not maintain this pregnancy. The decision to end it was calculated, essentially a risk ratio.
We survived and here is a bit about our journey.
Everett was born in March 2015 and weighed 1 lb and 8 oz. He was 11 inches long and the size of a 24 weeker. He was beyond fragile. Tim, my always optimistic husband cut the umbilical cord with scissors that were bigger than Everett. The operating room had at least 20 people there. I was happy. I had a new baby. I was terrified. I had a 27 week old baby would was intubated and placed on a vent immediately. He was given drugs to help his lungs. I had more complications from the birth afterwards and eventually I went home, but both he and I were sick. Everett called the NICU home for 140 days. One hundred and forty days. That’s a long time. It SUCH a long time in a baby’s life. Our life stopped and we were in survival mode. Everett was 6 weeks post my due date when he came home. He came home on oxygen with a monitor and could literally go two minutes without oxygen before he was saturating in the 60’s. He would be blue. The monitor and oxygen gave him life. He was not easily portable, but he was home. He was home with our family and he was alive. We lived the next 11 months with full time oxygen. Day and night. Night and day. A baby attached to a cord, the cord that kept him alive. It seems simple and in all reality compared to other things, it is. It is simple to maintain. It is however, very restricting. We kept him home except for doctor appointments for months. He was at an incredibly high risk for lung complications and we didn’t want another hospital stay. We were isolated. I returned to work after having him at home for only 6 weeks. I felt robbed of that time to enjoy my baby. Those 6 weeks were filled with specialist’s appointments. I felt like I barely knew how to do it all even though I did it every day in the NICU. I had amazing teachers of nurses and doctors, people whogot me through the darkest moments in my life. We had a new normal now. Our normal has peacefully settled in with us. We eliminated oxygen needs in June 2016 while he was awake andnight time dependency in November 2016. They have left all the equipment for illness, should that occur. It’s a shadow in our home. It haunts us a little in the corner of the room. We still check him religiously with the pulse oximeter.
The hardest and darkest days, aside from the first month, were at 37 weeks gestation. We were given the most difficult news. Everett had a relatively uneventful NICU stay aside from very severe respiratory complications. He spent 17 days on a ventilator, then months…MONTHS on CPAP (continuous positive air-way pressure). This pushes oxygen in him, but he is breathing on his own. It’s gentle, but it’s cumbersome. He had a mask, a snorkel and a hat to wear. Eventually, we moved to a different cannula system and we could see his precious face. At 37 weeks, a routine cranial ultrasound was performed. Previously, he had one at a week old and all was typical. At 37 weeks, it was noted he had neurological damage. He had Periventricular Leukomalacia (PVL). PVL has a 70% chance of causing Cerebral Palsy. It is damage to the white matter of the brain (the motor connections) and very low birth weight preemies are at high risk for this. Even with all the medical intervention, you can’t really prevent it. We would not know for a while how this affected him. By a few months post his due date, I knew. His arms and legs were different. His high muscle tone was kicking in and his lower tone in his core was not getting better. By June 2016 we had a Cerebral Palsy diagnosis. So, here we are today. It’s the beginning of December 2016. Everett is healthy. His eyes, ears, heart and body have all matured. His lungs continue to grow. He eats orally. He still is at high risk for lung issues and will be for a long time. He is social. He is chatty. He loves making a mess. He loves music and dancing with us. He loves being independent in his gait trainer. He loves being outside. He likes figuring out how things work. His favorite person in the whole world is his sister. He lights up with her like no one else. Our new normal is different than what we wanted. It is different from what we thought would be. We didn’t think we would parents of a child with a special need. We didn’t want to join this club. We mourn this new life when we think of what could be. Seeing other kids his age reminds us. It reminds us of what we don’t have. It reminds us of what could have been. I didn’t want to have a child who required the care he needs. Having worked in the field of special needs for my college and whole career, I am aware of many things parents who enter this world don’t know about. It scares me. We also have much to be thankful for. I’m alive. We have an adorable boy who is very aware of everything around him. He talks and has recently started to sit alone (a milestone we have worked so hard for everyday). We have good insurance for him that covers things we need. We mourn what we don’t have…Everett can not walk. He is 20 months. His sitting is not beautiful. He can not roll well from his back to tummy. He has a dominant left side. He is high muscle tone in his legs and arms. He is weaker in his core and shoulders. All of this makes life a bit more difficult. We have orthotics for his feet. He can’t play with some toys the way he should. We play with him and have therapy goals in mind. All of this, but Everett is a joy to have in our family. We love him more than words can express. It’s our new normal and we are okay with it. We know he will help change the world. His sister will have a bigger vision of empathy and love. Before these pictures, we didn’t have anything that showed us as a family of four. The pictures with MB are special for us. MB had known me before I had children. She took pregnancy pictures when I was very pregnant with Lily. She drove me to the hospital during the time after my c-section. She made us food. She has one of the biggest hearts I know. She lives for today and I admire this deeply. These are our first family pictures. They capture us. They capture the happiness our kids have. They capture the challenges we have. This. Is. Us. We are a family of four, who has a five year old girl and a one year old boy. They are real and raw. We couldn’t be more happy to have them forever. When I look at them, I see a mom who tries to do it all and looks like she has it together.
I see a dad who lives in the moment, loves us and thinks of the positives. I see an almost six year old who has grown up unexpectedly from the moment she turned four and her mom lived in a hospital for weeks. I see a one year old spunky boy who is happy and who works so hard for everything. I see a family who is different than what they thought they would be. The NICU left its scars on us. I see us. I am reminded at this time of year to be present in life, to enjoy today. We just ventured out for our FIRST family dinner after this photo shoot. We did it. We slowly are re-entering the world outside of our home/family and we continue to worry about illness at every runny nose and cough we see/hear. We are thankful for life today. I don’t know what future years hold for us, but we will keep on keeping on. We have two amazing kids who will make this world a better place. They make us live in the moment. These kids will make their mark. This is life as our new normal and we love it.